Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Treat the root cause

Discussion in 'General Treatment' started by Tabitha, Aug 11, 2016.

  1. Tabitha

    Tabitha

    Messages:
    37
    Likes:
    17
    If we knew what was wrong with our bodies, and we were able to treat the first main thing that went wrong, would most other things improve? Like I suspect a big cause of my illness is due to vagus nerve infection/poor vagal tone, so if I were able to treat that, I'd hope other things would get better.

    I also think a lot of my CFS is due to sleep problems, specifically disturbed REM sleep and hypopnia. I'm planning on trying kava kava or klonopin. Has anyone tried kava kava? I'd like to try that first since I don't have to get a doctor to rx that for me.
     
  2. JES

    JES Senior Member

    Messages:
    438
    Likes:
    695
    Treating the root cause would be difficult as we don't have the evidence yet about the exact mechanism behind CFS/ME, but there are some promising leads . Autoimmunity, mitochondria, enterovirus infection, abnormal gut microbiome, to name some.

    I'm doubtful that treating sleep is going to treat the root cause, I consider it more of a secondary problem. I get periods when I feel massive inflammation from a haywire immune system, during which it's very hard to sleep. A couple of anti-inflammatory supplements and the occasional benzodiazepine have been helpful for that. Basically anything that works on GABA receptors can be helpful, though these supplements (including kava) tend to produce tolerance over time. LDN is another good candidate, it doesn't have tolerance issues and reduces inflammation & and improves sleep.
     
    Valentijn and JaimeS like this.
  3. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    I think if you identify and treat the source you would see the improvements appear as a domino effect (same as when you first got illl, but in reverse this time). Regarding infections, there may be 2 approaches. For example, one approach might be to use antibiotics; but many of us may have severe reactions to taking antibiotics. So the second approach, may be easier to swallow (no pun intended), thru celluar metobolism. Treatments used would be more related to hormones and/or vitamines, and thus easier for our systems to assimilate.

    But the longer we wait to treat the source of our issues, the more difficult it will be to make a change. Our bodies will fight back, because its used to being sick. So we may experience improvements, but also severe side effects at the same time. That's why its important to be aggressive, and a risk taker now. Because sitting idly waiting for the perfect study with the perfect treatment (10+ years from now), may lead to a harsh reality that you can not tolorate the "perfect" treatment.

    I hope you can find a good doctor with 20-30 years experience treating ME/CFS (at least 10 of those years treating severely ill patients).

    GD :dog:
     
    justy, zzz and Gingergrrl like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,141
    Likes:
    23,366
    USA
    ITA with you on this. A year ago I would not have, and would have been too afraid, but now I agree whole-heartedly and don't think these studies will come in my life-time so I have to act now to get even the smallest improvements.
     
    Groggy Doggy and JaimeS like this.
  5. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
    I had pretty awful insomnia at the start of the illness and have little to no trouble sleeping, now. My symptoms definitely improved once I could sleep again -- and I can remember that feeling of just KNOWING that if I could get some sleep -- some real, restorative sleep -- everything would right itself.

    Well, everything hasn't righted itself, but it did improve every symptom significantly once I started sleeping again.

    I did an antibiotic -- my symptoms improved dramatically. There are also a number of OTC meds that I take that have improved my condition dramatically.

    Initially, I didn't act, for fear that I would obscure my illness -- back when I was still trying to get diagnosed.

    Screw it.

    There are so few doctors who understand this illness. Instead, do everything you can the moment you realize it's in your power. If I had dropped everything the moment I became acutely ill and started in on meds, I could be so much farther along.

    Then again, that gave me more research time on these boards. I remember carefully cutting my antibiotic pills into fifths having absorbed the "start low and go slow" motto.

    -J
     
    justy, zzz and TiredSam like this.
  6. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    Excellent!! Yes, many things can help (Rx, OTC, herbs, vitamins, etc). I am glad you could tolorate them.

    You are doing a great job!!! Its hard to make decisions when we are ill. We just do the best we can.
     
    JaimeS likes this.
  7. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
    Hit or miss. Lots of scary reactions along the way. Even they just have to be treated 'respectfully' though. I have one herb where I occasionally take 1-3 drops of tincture. The "standard dose" is 1-mL... 10-30 times that much.

    Thank you! I am tentatively hopeful lately. In the past two years I've gone from moderate to 'very mild'. I recategorized myself from 'mild' to 'very mild' just a few weeks ago. People would not believe this is the 'very mild' presentation of any illness, but for me I just see the distance between where I am and where I started and I am very very very grateful. :redface:
     
  8. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    Its just so awesome to hear about the improvements you got from a single treatment. I hope you get another chance to try it again at a slower speed. And next time, just expect that your body might push back and resist the IVIG treatment. I think its par for the course.
     
    Gingergrrl and JaimeS like this.
  9. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    Exactly. Progress may be slight each day (and easily overlooked) but when viewed over a longer time period (6 month or 1 year period), the results are monumental!! I am very happy for you!!!!
     
    JaimeS likes this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,141
    Likes:
    23,366
    USA
    Gosh, I hope that my body accepts it even better at the slower speed of 6-8 hours (versus three that they did last time! :jaw-drop::eek::nervous:). I will also be having a smaller dose of Solu-Cortef (60 mg vs 100 mg per my doctor) which could also reduce some of the swelling/edema that I experienced the next day prior to the headache starting. Am cautiously optimistic that the 2nd treatment will be even better than the first but I understand to be prepared for anything. My 2nd infusion is on 8/20 barring any new crises...
     
    justy and Groggy Doggy like this.
  11. Tabitha

    Tabitha

    Messages:
    37
    Likes:
    17
    Thanks everyone. I have been procrastinating on treatment, partly because of not wanting to obscure my illness and partly because of what friends and relatives would say about borrowing money from my parents. Stupid reasons, I know, but that's what my cognitively dysfunctional head comes up with.

    I have been thinking of trying LDN after hearing about it's immune-modulating and sleep helping effects, but was holding out partly to not obscure any immune system testing that my doctor's ordering for the next couple months. It's exhausting having to wait to see them, and then only getting 15 minutes where they want to address "only one concern at a time", and then worrying that bringing my mom along to help me communicate to them makes me look mentally ill... next time I have to communicate that I'm planning on seeing a specialist. I think that will be a good test to see if they take me seriously enough to actually try to help me.

    I've had very mild CFS since I was a kid, and overtime it's progressed to the mild category but I have very bad cognitive dysfunction from having it while I was still developing. I think it's worth getting treated now, given that my cognition makes even a mild level difficult to deal with. I live in the midwest and there are not a lot of prominent CFS specialists here. I'm currently making a decision with my parents on whether to find a specialist nearer to where I live or whether to travel.
     
    Groggy Doggy likes this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
    I'm sure that part of my decision was cognitive-dysfunction-related too. It's easier to defer action until an 'expert' has stepped in when everything feels so muddled.

    What you learn is that there is no 'expert'. You're it -- we're it.

    Maybe try phosphatidylcholine and/or DHA for cognitive function. B-vitamins and high-dose antioxidants really helped me with that as well.

    -J
     
    Webdog likes this.
  13. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
  14. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    I want to post more details about ME, based on the knowledge from the 30 years my doctor has been treating it (lake tahoe outbreak). I want to narrate the different causes,. how to diagnose it (lab tests), how to determine which options to use for treatments (plus and minuses of options), solid explantions of PEM, blood volume issues, etc. I want to publish the step by step metabolic flow so a patient could print it out and take it to their local doctor to get help. I need to get a bit better before I can tackle this. I am hoping next year I can get this done. It will be my gift to the ME community, to the network of brave survivors I am a proud to be a member of.
     
    JaimeS likes this.
  15. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
    You should check out what Hip has done with Hip's Roadmap @Groggy Doggy ! Being aware of what's already out there, you could add on or work on new aspects.
     
    Gingergrrl and Groggy Doggy like this.
  16. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    Sorry, but I don't quite understand how you could obscure your illness?
     
  17. JaimeS

    JaimeS Senior Member

    Messages:
    3,165
    Likes:
    11,618
    Mid-Ohio Valley, United States
    I can't speak for Tabitha, but I can tell you what I was concerned about when I did the same.

    Basically, I worried that temporary improvements would obscure or shift my bloodwork, making the problems more difficult to spot. I'm still not a clinician, but knowing what I know now, I believe this was incredibly naive of me. Nothing could have 'fixed' the ITT tests I ended up getting back at Mayo.

    My GP had me fooled into believing that the problem was 'subtle' because it didn't show up on CBC bloodwork. We were just in the wrong system(s).

    -J
     
    Groggy Doggy likes this.
  18. Tabitha

    Tabitha

    Messages:
    37
    Likes:
    17
    Yeah like Jaime said, I would like a diagnosis and have worried that medications I could start taking now like LDN might obscure test results in the future. But that really comes from me wanting to get validation, and the more I think about it the more silly it is.

    Does LDN help with autoimmune biomarkers? My doctor did have me get blood drawn for ANA levels as well as something else that has to do with autoimmune disease, so that would/might give me a biomarker I can monitor to see if LDN is working.

    Does anybody have any advice about talking to your doctor about wanting to try ldn? Specifically, what do you do if you started taking something without asking them ahead of time? I probably won't be able to get in to see her for a few more weeks, and don't really want to wait and ask her permission since it's not that risky.

    Also @JaimeS If you have time, could you look at a question I asked on your blog post about the stuff you take? Thanks!
     
    JaimeS likes this.
  19. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,127
    Likes:
    4,126
    I understand, it's hard to know what to do and who to trust.
     
    JaimeS likes this.

See more popular forum discussions.

Share This Page